Sunday, July 25, 2010

The first few days in St. Louis have been very busy for the Parris family. Nicole has kept me up to date via text messages when she gets a chance. I will share some of them, as well as some photos she sent me via MMS.

July 25 3:17 AMWrenn had a rough flight as do most surfactant babies. Their lungs are heavily affected by changes in altitude, which make it difficult for the transport team to keep their CO2 levels low.Once Wrenn arrived in St. Louis, the medical team had to stabilize her. Her hemoglobin level was low and her CO2 level was the highest it's ever been. She was placed on an oscillator, which is a large machine, more powerful than a ventilator but gentler on the lungs.

The medical team has done a lot of blood work on Wrenn, but first they put in a Broviac line for easy withdrawals. She did great during and after that surgery. To help raise her hemoglobin level and lower her CO2 level, Wrenn was given a blood transfusion. She will receive more transfusions during the transplant process.

The NICU team has been very methodical in how they've treated Wrenn. Their goal is to take a critically ill baby and bring her to a stable condition - keep her comfortable, stable, and make sure all her other organs are working well. This includes her heart, which now beats at a much slower rate (90-140).

The goal of the NICU team is to wean Wrenn from the oscillator back to the ventilator, and if possible, back to the Camula flow like she had in Florida before she needed the ventilator. However, the odds of doing this prior to transplant are not good because during the trip she once again developed Persistent Pulmonary Hypertension of the Newborn (PPHN). This often happens during a traumatic experience. I am told this is due to her lung problem as is her enlarged heart. Post transplant, both conditions will hopefully disappear.

Liz, a wonderful woman, and her husband Dan, met Wrenn today and also delivered some toys to Tanner to play with that their two boys enjoyed when they were little. I met Liz through my friend Pam who has stood by my side throughout this entire ordeal. Liz's father is a transplant surgeon in Houston,, so she knows about what we are facing. I want to thank her for taking the time out of her schedule to visit us at the hospital, and for thinking of Tanner who is also struggling to adjust to his new environment. (Lisa's note - just take one look at his face. It speaks a thousand words.)

July 25 9:12 AMI'd like to say a word of thanks to Nicole Neufeld, who had a Fay's Friends gift bag waiting for us in Wrenn's room. I'll take a photo so you can post it later. I also owe you material about Debbie's beautiful signs and Nicole's visit to Orlando. I haven't even cracked open my laptop yet but I will in the next few days.

July 25 9:53 AMEverything is so methodical here. It takes the emotion out of it somehow. All business with one common goal. It's crazy.

July 25 11:50 AMNews flash. Just met a dad two doors down whose daughter is being tested for a surfactant deficiency. I'll give you more information as I hear. It's a freaking epidemic.

July 25 10:02 PMThe photographer took pictures of Wrenn today. They do this for parents when kids enter and leave NICU. I'll load those tomorrow. Wrenn had a better day today. She is moving around her. 90% oxygen. Not as swollen and doing well with feedings.

I hope Nicole doesn't mind my posting her texts. But I think it's important for people to realize what a typical day is like for her. Finally, I'd like to share some photos of Wrenn's present world with you. Welcome to her room.

And now, please observe a moment of thoughtful silence, prayer, and/or communion with the universe to appeal for help for what rests peacefully, for the moment, inside.

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.